E-Patient Update:  Changing The Patient Data Sharing Culture

Posted on May 19, 2017 I Written By

Anne Zieger is a healthcare journalist who has written about the industry for 30 years. Her work has appeared in all of the leading healthcare industry publications, and she’s served as editor in chief of several healthcare B2B sites.

I’ve been fighting for what I believe in for most of my life, and that includes getting access to my digital health information. I’ve pleaded with medical practice front-desk staff, gently threatened hospital HIT departments and gotten in the faces of doctors, none of whom ever seem to get why I need all of my data.

I guess you could say that I’m no shrinking violet, and that I don’t give up easily. But lately I’ve gotten a bit, let me say, discouraged when it comes to bringing together all of the data I generate. It doesn’t help that I have a few chronic illnesses, but it’s not easy even for patients with no major issues.

Some these health professionals know something about how EMRs work, how accurate, complete health records facilitate care and how big data analysis can improve population health. But when it comes to helping humble patients participate in this process, they seem to draw a blank.

The bias against sharing patient records with the patients seems to run deep. I once called the PR rep at a hospital EMR vendor and complained casually about my situation, in which a hospital told me that it would take three months to send me records printed from their EMR. (If I’d asked them to send me a CCD directly, the lady’s head might have exploded right there on the phone.)

Though I didn’t ask, the vendor rep got on the phone, reached a VP at the hospital and boom, I had my records. It took a week and a half, a vendor and hospital VP just to get one set of records to one patient. And for most of us it isn’t even that easy.

The methods providers have used to discourage my data requests have been varied. They include that I have to pay $X per page, when state law clearly states that (much lower) $Y is all they can charge. I’ve been told I just have to wait as long as it takes for the HIM department to get around to my request, no matter how time-sensitive the issue. I was even told once that Dr. X simply didn’t share patient records, and that’s that. (I didn’t bother to offer her a primer on state and federal medical records laws.) It gets to be kind of amusing over time, though irritating nonetheless.

Some of these skirmishes can be explained by training gaps or ignorance, certainly. What’s more, even if a provider encourages patient record requests there are still security and privacy issues to navigate. But I believe that what truly underlies provider resistance to giving patients their records is a mix of laziness and fear. In the past, few patients pushed the records issue, so hospitals and medical groups got lazy. Now, patients are getting assertive, and they fear what will happen.

Of course, we all have a right to our medical records, and if patients persist they will almost always get them. But if my experience is any guide, getting those records will remain difficult if attitudes don’t change. The default cultural setting among providers seems to be discomfort and even rebellion when they’re asked to give consumers their healthcare data. My protests won’t change a thing if people are tuning me out.

There’s many reasons for their reaction, including the rise of challenging, self-propelled patients who don’t assume the doctor knows best in all cases. Also, as in any other modern industry, data is power, and physicians in particular are already feeling almost powerless.

That being said, the healthcare industry isn’t going to meet its broad outcomes and efficiency goals unless patients are confident and comfortable with managing their health. Collecting, amassing and reviewing our health information greatly helps patients like me to stay on top of issues, so encumbering our efforts is counter-productive.

To counter such resistance, we need to transform the patient data sharing culture from resistant to supportive. Many health leaders seem to pine for the days when patients could have the data when and if they felt like it, but those days are past. Participating happily in a patient’s data collection efforts needs to become the norm.

If providers hope to meet the transformational goals they’ve set for themselves, they’ll have to help patients get their data as quickly, cheaply and easily as possible. Failing to do this will block or at least slow the progress of much-needed industry reforms, and they’re already a big stretch. Just give patients their data without a fuss – it’s the right thing to do!